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Diabulimia and diabetes

Diabulimia is a serious eating disorder that people with Type 1 diabetes can develop.

What is diabulimia?

Diabulimia is an eating disorder that only affects people with Type 1 diabetes. It’s when someone reduces or stops taking their insulin to lose weight. But when you have Type 1 diabetes, you need insulin to live. So without it, there can be life-threatening consequences.

Diabulimia isn’t a real medical term, but it’s what people tend to call it.

You may know that stopping taking insulin can make you lose weight. But you may not know what it’s called or that it’s an eating disorder. Friends and family members probably won’t have heard of it either. But diabulimia is serious and more common than people think. And like all eating disorders, it can affect both men and women.

Diabulimia only affects people with Type 1 diabetes. People with Type 2 or other type of diabetes can’t develop diabulimia.

Hear a definition of diabulimia from specialist in diabetes and mental health Khalida Ismail. She is Professor of Psychiatry and Medicine & Honorary Consultant Psychiatrist in Diabetes King's College London, King's College Hospital and Guy's and St Thomas' Hospitals, King's Health Partners.

Diabulimia and mental health

Diabulimia is serious. But it’s not a recognised mental illness in its own right. And because it isn’t widely understood, some healthcare professionals may not spot the signs or know how to support someone with it.

It can be frustrating if you can’t speak to someone who understands both the physical and emotional aspects of diabetes. But healthcare teams are getting better at joining up services so you’re able to get help with your mental health from someone who understands diabetes.

And it’s important to know that when you have diabetes, you’re entitled to emotional and psychological support as one of your 15 health checks. This is part of your annual review.

"You're not on your own — it can be better, it feels like it can't, but you can live a normal life without diabetes." Lynsey

How diabulimia develops

There are lots of reasons diabulimia may develop. It’s often not just down to one thing – it might be a combination of physical, social and mental health problems. When you have Type 1, the things you need to do to manage it can play a part in setting off diabulimia, like:

having to carefully read food labels

the focus on your weight when you go to the clinic

having to eat to treat hypos, which can cause weight gain and guilt

being constantly aware of carbohydrates or calories in food

feeling shame over how you manage your diabetes

a bad relationship with your healthcare team

difficulty keeping to a healthy weight.

How common is diabulimia?

The term diabulimia may not be well known – but it is a serious problem.

But we don’t know exactly how many people are living with it. It’s estimated around 4 out of 10 women, aged 15 to 30, take less insulin to lose weight. And for young men, it’s around 1 out of 10. Research shows men with diabetes are more worried about their weight than men who don’t have diabetes.

Insulin and weight loss

When you’re diagnosed with Type 1 diabetes, you’ve generally lost weight. Starting insulin can mean you put that weight back on. Some people can find this hard to deal with and this can be one of the reasons they start to skip doses.

Without insulin, your blood sugar levels build up really quickly. This is known as hyperglycaemia (or hyper) and you start going to the toilet a lot. Any calories you’re taking in pass straight through and out of the body in your urine.

This means you can’t get the energy you need from food and you start to break down body fat instead. This leads to dramatic weight loss.

Consequences of diabulimia

If you don’t get any or enough insulin, your blood sugar levels won’t come down. This is very dangerous and it can send you into diabetic ketoacidosis (DKA) – which can be fatal.

And if you regularly stop taking insulin for a long time, you will harm your body. You could lose your sight, damage your kidneys and damage the nerves in your feet. These are called diabetes complications. They can happen because high blood sugar levels are damaging your blood vessels.

Treatment for diabulimia

It can be difficult to break out of the harmful cycle of not taking your insulin. But with the right help and support, you can recover from diabulimia.

Diabetes teams, GPs and eating disorder specialists are becoming more aware of diabulimia. Diabulimia needs careful treatment from a team of specialists. And some dedicated recovery programmes are now up and running in the UK. So you could be referred to an eating disorder clinic or a counsellor for specialist care.

The first step to recovery is asking for help. Hear from Lynsey on how she managed to start her recovery.

Asking for help with diabulimia

It’s not always easy to manage diabetes. And coping with an eating disorder like diabulimia can make it even harder. You may also feel bad about hiding it from the people you care about.

But you’re battling a serious condition and no one can do that alone. It doesn’t mean you’re a weak person. Everybody with diabetes has their ups and downs. You’ve managed your diabetes well in the past, but now you’re not able to. So you need help.

"It's easy to say, but speak to someone. If you don't speak to someone it just gets worse. You'll feel better when you acknowledge it's a problem. I felt I'd got into such a deep hole with not managing things that it would be impossible to change that around, but the right people can help you get there." Lynsey

Asking for help can feel difficult because you know this is the start to facing up to and dealing with the problem. But you won’t be doing it alone.

Once you’ve shared the difficulties you’re having, you can take the next step when you’re ready – and that’s getting advice and treatment from a healthcare professional.

Talk to someone

Talk to someone you trust. This could be a friend, a parent or sibling, a flat mate, a colleague, or a member of your healthcare team. Their response may surprise you. People who care about you will want to help even if they don’t understand what you’re going through. They will worry less if they know you’re being honest with them.

You could also ask a family member or friend to go to a healthcare appointment with you.

"Speaking to your friends or family is more powerful than you can imagine. If you’ve not been telling them and then you tell them, it’s a massive weight off your shoulders. Activating support you’ve already got, and realising there are people out there who care about you and love you and want to help. You might find that more powerful than looking for the expert as a first step." Professor Khalida Ismail

Call our helpline

If you’d rather speak to someone you don’t know, call our helpline. Our trained counsellors are here to listen.

Support for diabulimia

You can get support with diabulimia from the charity Diabetics for Eating Disorders (DWED). There’s online support for anyone with Type 1 diabetes with an eating disorder – and those who care about them. DWED run two Facebook groups – one for people with an eating disorder and one for family, friends and carers.

Type 2 diabetes and diabulimia

If you have Type 2 diabetes and you take insulin to treat it, the consequences of not taking insulin aren’t the same. So that’s why we talk about diabulimia only affecting people with Type 1. But we know people with Type 2 and other types of diabetes can struggle with other eating disorders. If that’s you, we know asking for help can be difficult. But opening up to someone you trust will mean you’re not alone with it. And it can be the first step in getting the help you need.

The charity Beat Eating Disorders (Beat) offers help to anyone with an eating disorder. There’s a helpline, web chat and lots of information including how to get help and treatment.

We'd like to thank Jacqueline Allan, researcher at Birkbeck, University of London, who set up DWED (Diabetics with Eating Disorders) who has given us the facts about diabulimia and where to get help.